I posted this to Facebook but forgot to post here. Thanks to Kevin Hansen, a gentleman going through the same journey who we have connected with on Facebook, we found the biopsy results.
No Significant Rejection
Woo-hoo!
Celebrating a beautiful Alaskan life and living with heart failure!
I posted this to Facebook but forgot to post here. Thanks to Kevin Hansen, a gentleman going through the same journey who we have connected with on Facebook, we found the biopsy results.
No Significant Rejection
Woo-hoo!
[Written at 1:00pm, posted at 5:45pm]
Once again I'm on the plane but we are headed home. We played switcharoo with plane ticket dates but decided Saturday the 15th would be best.
Patrick is doing better today than he has since before the incident on the 10th when he had to go in for another open-heart surgery (via an incision below his sternum rather than a sternotomy through his bone). He was switched off a diuretic that was intended to help him lose water weight which was instead giving him intense muscle pain throughout his entire body. Now that he is back on good ol' Lasix he feels much better and is getting himself in and out of bed on his own. He is also losing some of that water weight, which will hopefully lessen enough to make walking more enjoyable. He is currently trying to do his daily walks on feet that are ballooned to twice the size they should be.
While I wish Patrick could sit down and type out his every feeling, reaction, and emotion surrounding the transplant, that's just not who he is. So you guys are stuck hearing my every feeling, reaction, and emotion.
The last few days were by far the hardest of this experience for me. One of the hardest things for me to deal with in our marriage is when one of us is unhappy with the other. I like joy and happiness and contentment. I don't deal well when we have discord.
Without going into detail because that would take ages, I can say we had quite a bit of discord this week. Most of it was due to Patrick's discomfort, his pain, and his frustration - all completely reasonable. But I had a two-fold cloud hanging over my head. I was upset because he was completely disregarding my emotions, thereby causing me to feel completely useless and cut out of his medical care. But I was also struggling with feeling selfish for wanting him to be more considerate of my feelings when he was going through the single hardest, most traumatic event of his life. Mentally, I wasn't okay this week.
And these things caught me completely off guard, which was one of the reasons why it hit me so hard. I had anticipated my presence bringing him comfort, and there came a point when it didn't. In fact, it seemed to do the opposite and agitated him. I had expected to be able to help him but he was in so much pain, and so worried that his kidneys were going to fail, that there was nothing that would help him once he decided to forgo pain medicine.
And when I did the only thing I could do, which was to keep the kids and I busy during the times between hospital visits by seeing sights, visiting stores we don't have in Fairbanks, and exploring some nearby attractions in Seattle, he accused me of treating this like a vacation. In a sense that's exactly what I was doing, because the alternative was to worry and cry and stress 24/7. But the shopping for a few momentos and utilizing the family passes gifted to us for the Seattle Aquarium and the Woodland Park Zoo was godsent time because it kept our minds off of our worry for Patrick.
And being in Seattle during these last two weeks has meant I was there when he needed me - whether he knew it or not - during the balloon pump plug rupture and the internal bleeding episode on the 10th. (Honestly, I don't think any of the blood in Patrick's body is his own at this point. He has received SO MANY transfusions! During the transplant, after the plug burst, after the internal bleeding... Good grief).
Onto more of his update...
A couple days ago one of his providers, a NP at UW Medical, told me they felt his kidneys had turned a corner. He wasn't getting rid of fluid the way they wanted him to, and his kidneys took such a big hit during the second open heart surgery that they weren't functioning properly. Dialysis was discussed but not implemented, and I'm hoping we have passed that point and they just needed some time to recover.
I also don't have the results of the biopsy. The last time I asked Patrick about it he wasn't in the best frame of mind and he said he didn't care what the results were. I'll call the hospital soon and ask if he has been given results.
As for when we will see him next, I am hoping sometime between mid-May, when school ends, and mid-June. Patrick will find a reason no matter what time I choose to tell me to stay home, but sometimes I feel beyond listening to him. By May he should be in the Transplant House and on his way to recovery. We can drag him to the aquarium and the zoo and remind him that what is important is making memories with the kids.
As always, we are grateful to Andrew and his family. We don't know if we will ever meet them, but with the news coverage Patrick has received we think there may be some families out there who suspect their loved one's heart is now beating inside Patrick's chest.
To you, we say thank you (and forgive us for the liberty of naming him Andrew - we would use his true name if we knew it). As I have said before, we love you. And we hope you are proud of the man to whom Andrew's heart has given the gift of life. You have given me what will hopefully be decades extra with him, and I can't fully express my gratitude, or what that means to me. Patrick will not let you down. The heart now beats inside a man and has taken up the role of his servant's heart, and Patrick's goal is to never take it for granted - not for one single second. He will spend the rest of his life paying it forward, continuing his life's mission to help the elderly, to ensure they maintain their dignity and individualism to the very last, and speading God's love in any way possible.
Signing off for now. I will update again when I learn more information. We are about thirty minutes out from Fairbanks and I need to mentally prepare myself for snow...
I was mistaken last night when I said the pacemaker leads the team removed were the old ones. I found out this morning that those did indeed come out during the transplant procedure, and that the one removed yesterday were the temporary leads that had been attached to the new heart. This was my mistake.
So yesterday Patrick had the biopsy done at the same time those temporary leads were removed. He said the person who pulled them did so in the only way to accomplish it without invasively cutting into him - by tugging on them until they released. And since there were two, Patrick had to endure that twice.
After the procedure I spoke with Patrick a couple times and everything seemed fine. But shortly after 2pm he said he wasn't feeling well so a nurse helped him to sit up. He said he felt like there was pressure building up around his heart and couldn't breathe while laying down. So he sat up and instantly not only saw blood gushing through his chest tube, but from around the tube and out of the hole as well, making a mess beneath his hospital gown. His blood pressure was dropping because he was truly losing blood fast.
When he found out he needed to be rushed into surgery he demanded his phone so he could call me. As uncomfortable as he was, and as hectic as that room must have been in that moment, his only thought was to speak to me because he thought he was going to die.
It eventually became worse for me as the day wore on. After speaking with the transplant surgeon at 3pm I began to worry that the next call I would receive would be, "I'm so sorry. He bled out and passed away."
And the absolute hardest thing to do in that moment of worry is to keep a happy face on in front of the kids.
This isn't the first time by any means that I have envisioned having to tell them that their father died, but it was one of the closest. I often say Patrick's heart failure was the third person in our marriage for a long time. So I have often played out the most horrible scenes in my mind as a sort of self-preservation. After all, the only worst thing than telling the kids Patrick died is doing it after not having prepared myself to do it.
The transplant surgeon, Dr. Khoursandi, explained what had happened earlier during Patrick's biopsy but I didn't hear everything he said. We were in a busy location, and I was stressed. I heard enough to know they were going to open Patrick back up and fix what was wrong.
I went in last night to see him and it was so hard, seeing him once again hooked up to the ventilator with tubes and wires coming out of him. I wasn't thinking incredibly clearly last night when I posted the update. I was tired and traumatized.
I received a call after I had returned back to the house, at 11:30p. It was a nurse.
"I have someone who wants to say hello."
Getting to speak to Patrick before I went to bed was wonderful. I knew he was in pain and uncomfortable, but I also knew he was in good hands. The call didn't last long, but it was enough to encourage me to go to sleep without much trouble.
I saw him again this morning and I arrived just in time. He had called me at 8:30a to say he was in a terrible amount of pain, so I very quickly got ready, told the kids how to get breakfast and to work on schoolwork, and left. When I arrived, a nurse had just pulled one of the three catheters in Patrick's groin and was applying pressure. She said she would have to apply pressure for about 30 minutes for each catheter. I'm glad she was nice and easy to talk to because she was there for my entire visit with Patrick! But I knew I liked her - she was the same nurse who sat with me for ten minutes last night after she walked in to find me crying over Patrick's unconscious body.
I spoke again with Dr. Khoursandi after yesterday's procedure and he said they put in a second chest tube. I learned today when I met the surgeon in person for the first time that the tube is under Patrick's sternum running upwards into his chest cavity and is resting above the new heart. Patrick hurts with every breath and is in excruciating pain whenever he coughs or tries to clear his throat. He says it feels like he has a metal rod running through the middle of his chest. Hopefully, the chest tube will come out later today, along with the catheter.
The kids and I shortened our trip to Wednesday because he was doing so well, but we are now bringing back those extra days and will be back home in North Pole this weekend. Again, we want to thank everyone who has helped us through this process, which in reality are just too many people to name.
But I can try!
To the transplant team and everyone who has been involved in Patrick's care at the hospital, I am eternally grateful. To Alaska Airlines for being so accommodating, there are no words. We couldn't have done this without you. To Jami from "Kisses From Kena" for her fundraising (and all the wonderful donors of the Cyberlynx fundraser!), and for her outstanding care package skills. To our friend who has generously offered to watch our chaotic, neurotic golden retriever - you are an angel. And to our house sitter, those who kept an eye on the house, the wonderful couple collecting our packages, and everyone in our neigborhood - Patrick and I absolutely chose the perfect home and neighborhood for our family.
There are countless others - our families and our church family, coworkers and friends and aquaintences, our hosts who will forever be our adopted family and the wonderful people Patrick and I have met through them. To the Go Fund Me donors who have generously sponsored the rent at our shop in Fairbanks and our mortgage payments - named and anonymous donors alike. To the teachers and support staff at our childrens schools who have kept us in their thoughts and prayers and who have rearranged assignments and offered help in any way they can - bless you.
There are not enough words in the English language to express our thanks and to express all that everyone has done for us. From financial help to extending yourself to offer aid to juggling plane tickets for us so the kids and I could sit together to the kind words offered in passing as a hello on the street.
No kindness has gone unnoticed. None. Not a single one.
I'm signing off for the day. I will see Patrick again tonight, and hopefully will hear from him or will call the nurse's station for an update during the day to see how he's doing. The sun is just starting to peak through the clouds here in Seattle after a string of rainy days so the kids and I are heading outside.
With thanks,
Haley